如何处理JIA治疗的成本

并非所有的JIA案件都是相同的。病情较轻，孩子不太可能看到多个（且昂贵）的专家。也许他们可以服用甲氨蝶呤（MTX），一种免疫抑制药物，零售价为2.69美元，以驯服症状。但是，如果孩子的病情已经恶化？家庭法律师助理海蒂·巴雷特（Heidi Barrett）说，这是快速的，他主持了关节炎基金会的三个州章节，他有四个（五分之二）的Jia。她透露：“我们不得不宣布医疗破产。”“我们已经两次消灭退休，以支付孩子的医疗保健费用。”

What’s the biggest cost in JIA treatment? Biologics, innovative drugs that are produced from living organisms that are key in treating it, says Monica Friedman, D.O., chief of pediatric rheumatology at Orlando Health Arnold Palmer Hospital for Children. They run $10,000 to $30,000 annually, but can skyrocket to $500,000—and how much you owe in the U.S. depends on if you’re insured (as well as on how much your health plan covers). One of Barrett’s kids is on a biologic with a listed cost of $26,000 every three to four weeks (annual bottom line: $312,000, though few families pay the full out-of-pocket price). Currently, only five biologics are FDA-approved for JIA.

下一个大费用？医疗保健的约会。弗里德曼博士解释说：“最初，每月看到患者，然后根据药物及其关节炎，对患者进行了任命频率。”连续三年，巴雷特每周（每周）每周四天与JIA相关的约会。2019年的一项研究发现，与没有病情的孩子相比，与没有病情的孩子相比，与没有病的孩子更有可能至少有一次住院，一次急诊就诊和门诊医师办公室探访。您可能会怀疑：所有此类访问加起来为JIA患者，总成本比没有JIA的患者的成本高。

Keep those higher costs of multiple doc visits in mind, because kids with JIA also might need an array of specialists to help manage their condition, especially if other issues are occurring, Dr. Friedman says. That medical team could include a pediatric rheumatologist, pediatric ophthalmologist, physical therapist, oral and maxillofacial surgeon, orthopedic surgeon, dietitian, and a psychologist or therapist. Each one can treat a specific problem related to JIA, such as eye problems from uveitis (ophthalmologist) or challenges with walking and getting around (physical therapist). Some insurance plans have higher co-pays for specialists, so these costs can compound quickly.

患有JIA的儿童可能会进行常规的血液检查，或针对与该病有关的各种症状，包括检查关节损伤的迹象，包括X射线，超声，MRI和/或CT扫描（包括X射线，超声，MRI和/或CT扫描）。研究和Barrett都指出，这些测试也可能会变得昂贵：MRI和CT扫描等成像测试可以运行5,000至10,000美元。您的自付费用会因保险计划和居住地而有所不同；确保您的医生打电话并验证预先批准，以避免任何不必要的惊喜。

JIA还有很多其他，不太明显的成本：运输，护理人员住宿，旅行费用，替代疗法和治疗并发症。Pediatric Rheumatologystudy. “You have to add up all the hidden costs, like taking time off from work to take a child to appointments or if the child gets sick,” Barrett says. Special diets for kids with JIA can run hundreds of extra dollars a month. And then there’s shoe inserts, special appliances and adaptive devices, gym memberships to stay active, remodeling houses to accommodate kids’ needs … the list goes on.

尽管无法减少JIA治疗的许多费用，但有些可以降低。父母和监护人可以“与Arthritis Foundation弗里德曼博士建议，其他组织可以在社区内获得帮助和资源。“医院的财务顾问还可以作为帮助管理成本的资源。”医院有时会提供经济援助，而在某些州则提供赠款，以协助慢性疾病儿童的医疗费用。巴雷特建议，探索您可以提供的所有选择。

All pharmaceutical companies that make biologics for children with JIA offer co-pay and/or hardship assistance programs that cover the difference between what your insurance pays and your own out-of-pocket expense. This is incredibly helpful, says Barrett, especially if you have a deductible to reach before your plan pays 100% of your medical costs. “Because we receive co-pay assistance from the pharmaceutical [company] for our infusions—[meaning that] we do not incur any out-of-pocket [costs] because the co-pay assist pays what we owe for the infusion—we meet our out-of-pocket deductible fairly fast,” she explains.

我们不能强调这一点：接受您的健康保险所涵盖的内容（也没有）。巴雷特建议：“您需要知道您拥有的计划类型，以及哪种国家机构和联邦机构可以提供帮助。”另一个提示：定期仔细检查您对福利（EOB）的解释，以检查医疗费用。“一些保险公司会向在EOB中发现损失保险公司的EOB中发现错误的人授予钱。”另一件事？“这也有助于了解您所在州的合法和非法范围。一些州提供了防止先前存在的条件和覆盖范围的保护。”她补充说。

It’s easy to lose sight of what this is about—children with JIA. For Barrett, the financial toll has been tremendous, but her family’s Herculean efforts to cover costs are well worth it. “My kids know the financial burden of this disease is not about them. If we lived in other industrialized nations this would not even be in the narrative,” she says. “I never tell our children we do not have money for that, or we are poor, or we are spending too much on medical. What I say instead is we are choosing to spend our money differently or on other things.”